“Instructions for living a life.
Tell about it.”
― Mary Oliver
I’ve been gone for a couple weeks from writing, and it’s time to tell you why.
I chose to tell this story here because maybe someone who needs to will read this story today, and it will save their life.
But I also chose to tell this story here because words shared with others is always where I begin to make sense of things myself.
A little over a week ago on a late Monday afternoon, I went to urgent care because one of my sons had the flu and I had not been feeling myself for a couple weeks. I wasn’t sick, I was just… very off. After a 2.5 hour wait on some pretty uncomfortable chairs, they didn’t find anything emergent wrong with me. I pointed out my low blood pressure to the doctor and said: “But that – that isn’t normal for me.” She admitted it was low but not “she’s dead” low, so they sent me home with tamiflu and instructions to maybe check that out someday soon.
But I couldn’t wait for someday. In truth, I had felt the nudges in the back of my mind to check myself out for days now, weeks even. I was unusually tired. I was winded walking up stairs. I was kicking myself every time I worked out because I was getting weaker instead of stronger. In the last few days before urgent care, I had even been sitting down just to get ready in the morning and hot showers made me feel like I was going to throw up or pass out. This was all far from normal.
I got home and emailed my primary care doctor that night. He told me I should come in for an EKG and some tests, and so I set up an appointment for Wednesday. Luckily, however, they had a cancellation and they asked me to come in on Tuesday afternoon. My EKG was normal. My lung tests were normal. My ears, my throat, my eyes… It was all normal. So, the doctor took 10-ish vials of blood and sent me home.
This particular doctor gets blood results back in 24 hours or less (another supremely lucky detail in this story), and I can usually see all is good in the app before anyone contacts me. So when I got a call at noon the next day with no results at my fingertips… I knew it was not good. The PA ran me through a whole long list of what was normal before he got to: “Your potassium is way too high and your sodium way too low. The only way to get those regulated is to go to the ER as soon as possible.” I was home at the time with a sick kid, and I was so very tired. But despite his flat tone, I felt the urgency behind his words. I took my son and went straight to the car. I drove a little further than I probably should to a hospital that was bigger, had a stronger reputation, and I knew better than the one just down the street from my house. We had to park far from the emergency doors, but my little trooper kept me entertained on the long walk from the car into the bustling building.
It wasn’t a good day to go. It wasn’t a good week to go. Ambulances were coming in faster than they could process them, the waiting room was full, and everyone was tired. People are sick right now with everything and that combined with the normal run of holiday accidents, heart attacks, seizures, and the like – hospitals are full…especially the good ones.
I honestly felt so stupid. I mean… I drove myself there. I walked up to the desk. I was speaking clearly and filling out forms despite a shaky hand that I think was only due to my nerves. I told the busy woman behind the desk “My doctor sent me, my bp is low and my lab numbers are bad.” She took my name, gave me a band, and sat me down in the waiting room. Luckily my husband came to get my son and take him home at that moment, and so I only had to worry about me. When I finally got to triage, I showed the nurse the numbers on my primary doctor’s app, and she immediately found the ER doctor. I hadn’t had the energy to google it yet, so I still didn’t know what was wrong. They gave me an EKG and it was still as fine as it had been the day before in the doctor’s office. Then, I saw the doctor, and he said: “We are going to check your blood again. Your potassium number is insane, but I think it’s wrong. If it was really that high, you’d be dying and we’d know.” He was trying to be reassuring. He was trying to tell me someone made a mistake, but I knew deep down they hadn’t.
I got moved again to sit down and get my blood taken. But every time the guy came by to stick me with a needle, someone needed something urgently. Someone wasn’t breathing. Someone’s EKG demonstrated they might be having a heart attack. Someone didn’t know how to start a central line in a room down the hall. I sat hunched over in the chair oddly calmed by the chaos around me while wondering how close to that “dead” or “dying” I’d become if he didn’t stick the stupid needle in my arm soon. He finally took my blood and put an iv port on my arm and sent me back into the waiting room.
It was so crowded that I had to sit far from the front desk. I learned from watching a man be put back to the start of the line that if you didn’t hear your name called once… they didn’t call it again. So, every time someone got up. I moved to a chair nearer to the front desk. I was still about 50 feet away when I heard the nurse behind the desk call the testing center and ask about my potassium. She didn’t see me watching her or hearing her every word as clear as day (me and the entire waiting room). I heard her say: “Are you sure?” I heard her repeat the number again. Then I heard her say, “well we don’t have any beds, but I can watch her up here until we do.” Let me tell you, I felt those words all the way through me. As I waited what felt like years for her to call my name, I took a moment to look around the waiting room. There were so many sick people there who had been waiting even longer than the 3-4 hours I had. Some had to be propped up in wheelchairs. Some were leaning heavily on their companions just waiting for a turn. And here I was extraordinarily tired but walking, sitting up, fully cognizant of my situation… it didn’t make sense that I was also clearly critical. As soon as she called my name, I walked as quickly as my heavy legs could carry me to the triage station. She hooked me up to a bunch of monitors in a side room and left the room with the door wide open to handle the next person coming in.
The rest was kind of a blur. The minute an ER bay was open, I was in it. They flushed a bunch of painful sugar water and insulin through my iv port. They asked me a bunch of questions. They took so much blood. Then they told me I’d be admitted until my potassium was down, my sodium was up, and they found a cause. That was Wednesday. Two full days past my random trip to a busy urgent care. I stayed in the hospital until Friday. I went home and ended up back in the ER again on Saturday. Now I’m finally home again, and I know what has been happening to me. Everything has clicked right into place.
Turns out, I have a rare autoimmune disease called Addisons’ Disease where my immune system decided for no good reason that my adrenal glands were the enemy. Slowly, over time (several years probably)… my immune system took out the enemy. Now, my body doesn’t produce cortisol or aldosterone – two hormones that help keep you alive and hydrated. The prognosis is fine. I’m alive, and I’ll stay alive as long as I stay on steroid replacement for those two hormones and keep myself hydrated. I have to stress dose the cortisone when I get sick or hurt or overly stressed which is why I ended up in the ER a second time – I had undiagnosed flu too and I didn’t yet know what I had to do to mitigate that. I also have to wear a medical id bracelet and carry an emergency injection kit. If I’m unconscious or hurt or just plain out of it, I need an emergency shot of cortisol. It’s imperative to my survival. In fact, intravenous steroids would have saved me some time and distress on night 1 in the ER if they knew. Other than all that, I can live a normal life. Right now, I’m working on figuring out the right doses of everything so I can get back to that life I’m desperate to be back to living.
It’s only been a few days back out here in the real world, but I’ve learned a lot already about what it means to live with a rare disease. People don’t always understand what it means. Pharmacies who have never sold an emergency cortisol shot look at you (and talk to you) like your drug-seeking. Doctors who know the disease say: “You’ll be fine.” while also saying “Don’t mess up!” It’s a lot.
But still, I know I’m really lucky to be sitting here today. I’m lucky my son got the flu (yes, I just said that). I’m lucky I saw the blood pressure reading because I never pay attention to those. I’m lucky I had a doctor who gets test results in less than 24 hours. I’m lucky that I eventually got the two life-saving medicines I needed. I’m lucky (no privileged) to have good insurance, and that I live in a big metroplex (sorry DFW, I often give you such a bad wrap… but man I love you at this moment).
And I’m lucky for Social Media. These days, it gets demonized a whole lot. And I get it. It can be used for so much harm. But it also can be used for life-saving good as well. The minute I got into a hospital room and was left alone for the night with a saline bag and a heart monitor, I had some time to google. I figured out what I had before the tests were even done being run, and I joined an online Facebook group for adrenal insufficiency. This group has answered all my questions. They have helped me figure out the things that didn’t make sense, things that the doctors who rarely see this disease didn’t quite know. For instance, everytime I am dehydrated and/or my cortisol is too low… my left side hurts. Everytime I work on those two things, the pain magically goes away. I’ve already been told it’s nothing but muscle strain way too many times to count in one week alone. I figured this out from that group, and it helped me do what I needed to do to raise my dropping blood pressure last night. Social media has the unique possibility of uniting people with rare diseases from all over the world together and helping them get back to that normal that a mere doctor’s appointment every three months might not be able to do.
After Christmas, I’ll share with you the warning signs that now make so much sense to me. But for now, it’s Christmas-time!
It’s time to celebrate the One who walks with us through the craziest, most unexpected sh$t.
For now, if you are still reading, thank you. If you are still reading, store this away or share it. It might just save a life.
I started this post with a quote from Mary Oliver that I’ve used time and time again. But tonight as I write this, her instructions for living a life has new meaning for me.
If I didn’t internalize and follow these ”rules”, I wouldn’t be here writing this to you today.
And for God’s sake…
Tell about it.
Wishing you and yours a very Merry Christmas!
(Please note: Addisons’ Disease or Primary Adrenal Insufficiency is not adrenal fatigue. It is a medically diagnosed condition that can only be mitigated by replacing the hormones the body no longer makes.)
(Please note: All medical information contained in is post is the first hand experience of the author, if you feel you have similar symptoms see a licensed medical practitioner.)
Oh, Gretchen, what you went through ! So happy you got a diagnosis and correct treatment-eventually. I have been missing your posts…Merry Christmas to you and all your boys. Good luck adjusting all the new things going on in your life and health. Happy and HEALTHY New Year.
Thoughts and prayers to you and yours. If those boys need a break, Uncle Bob can usually entertain the little ones. Take care. Merry Christmas!
I’m so glad you wrote this out. Your voice and your experience matter. Here’s to a new year filled with new things.